Hello everybody. I am new here. My name is Bridgette. I'm 26 years old. I have a seven year old daughter. Unfortunately my boyfriend of eight years passed away on January 31, 2002. He was only 23 years old. When he had turned 21 he had his first grand mal seizure. We never knew that he had epilepsy but when I think back to our teenage years he always used to black out due to certain lights and he also complained of headaches. We never thought much of it until he had his grand mal seizure. He was tested numerous times but nobody knew why Ray was having seizures. They called it idiopathic, no known cause. When he was 21 up until he died, he would have atleast seven grand mals a week and ended up in the hospital after each one because they were so severe. His seizures were like a pattern. He would always have them in the morning. They would first start out with myoclonic seizures for about an hour or so and then he would go right into a grand mal seizure. He was taking Tegretrol, Neurontin and Diazepam and took a number of medications before that but nothing seemed to stop his seizures. We had asked his neuro. what the risks of having epilepsy were but we just got a shrug and the response of "You don't have to worry about that." I was taking care of Ray for the past two years while he was going through the seizures and they got progressivly worse after time. One day when nobody was around Ray had a grand mal seizure and suffocated in his pillow. I had talked to him on the phone that day about an hour before his death. He told me to come right away because he was having seizures all morning. Any other day I would have went. But, for some reason on that day, I didn't go. I have alot of guilt. I wish I could erase that day from my mind completely. But the pain will always be there and I know that it will never go away. If I could prevent something like this from happening to somebody else I would do it in a minute. That's why I am posting this. I have already posted in a couple different websites. People with epilepsy need to know the risks involved and doctors' won't tell their patients or their families about this. It's not right. Ray's family, our daughter and I had to learn the hard way.

Please talk to your doctor about the risks of epilepsy. And don't let shrug it off, like Ray's doctor did.

Thanks.
Take care,
Bridgette

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Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.

Hi - and a big thank you for posting your story. After 17 years of watching my daughter seizure (often daily and many times - of every type as well)......my reality has always been that she may pass away from a seizure. No, her doctors have never told me this but experience has shown me the possibility that it could happen. Please be proud of your caregiving and remove the guilt. Seizures are unpredictable in nature and severity and caregivers are angels.I am proud of you and I'm sure your partner is as well...... Loving life........Rebecca's Mom

Hi Rebecca's Mom,

It's hard to remove the guilt but I try. I hope people don't think that I am coming here to tell people that they will die from a seizure. That's not the case. I just want to let people know that it CAN happen and if the doctors aren't going to discuss this with you then who will? There is a small chance of it happening but it still should be discussed.

How old is Rebecca?

Bridgette

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Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.

MissingRay,

I too, feel that doctors in general do NOT listen to their patients. I find myself asking how come doctors do not know about medications that I know about simply from looking on the web and taking a minor interest. How they always act like their patients exaggerate. I had a doctor come right out and ask me why I was tring to get medication for my back...like I was going to go down on the corner and sell it to some school kids! He took X-rays and told me "congratulations, you have the straightest spine I have seen in years"...I find out later, through a chiropractor that my spine looks like a question mark...I saw it myself and was shocked...no doubt, said he, that I had been in pain for years.

You should not feel guilt about what happened...you gave him love and much caring, that he may not have had without you in his life. No doubt that you and your daughter are what he felt were the biggest and best accomplishements and treasures that he had....no doubt that you are what he lived for. Let go of guilt, forgive yourself, as you have done nothing wrong.

I want to thank you for sharing your story with others. You are doing the right thing..please, free yourself up of the guilt and pat yourself on the back..."when you believe that you cannot stitch your own heart back together, go to work on the heart of others..."

Blessings to you and your daughter~
Anabel

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"Life is what happens
while you're making
other plans"~John
Lennon

[This message has been edited by Abelle (edited 10-15-2002).]

Hi - just replying to your question of Rebecca's age? She is 17 and just adorable. She functions at around age 4, but can be quite social. We always opt for quality of life for her(medication vs seizure control is always an issue) Her seizures can be so severe at times that her not making it through one of them is truly our reality. We as a family are committed to her 24/7 but we do have to sleep and live as well. Sometimes it is beyond our control.God how we love Rebecca. I'm sure you have lived and learned lots of lifes lessons through your love and care of Ray. Use those tools for the rest of your life and all will not be forgotten..He is surely proud of you......loving life.......Paula

Thank you for sharing your thoughts during your year of grief. In May, my eight year old son had his first grand mal seizure. In July he had a noctural seizure with vomiting. Recently, I let him sleep with a pillow again. Thanks to your post, I have decided that I will not let him sleep with it the entire night.
I truly believe that fate resides over each of our lives. There have been so many examples in my life where I have tried so hard to avoid certain situations only to have them appear anyway in spite of my efforts. Your husband met his fate and I believe there is nothing you could have done or not done to have changed that. I'm sure your husband is counting on you to be happy as you provide the love and support for the daughter who is the legacy of the love you both shared. Take care.

Abelle:

I don't believe that the doctor you saw couldn't tell that your spine was crooked. That's crazy. I'll tell ya....some of these doctors out there should be fired! They are horrible. Thank you for your kind words about Ray. You are exactly right when you said that I gave him love and caring that he may not have had without me. That is so true. His family is very distant from one another. I was the only one he had. I practicly raised him from age 15 on. Not only was I his girlfriend but I felt like his mother or older sister also. And I love the quot "when you believe that you cannot stitch your own heart back together, go to work on the heart of others..." That means alot. I was getting alot of negative posts in another website that I posted in. People were telling me that I basically was making everybody depressed and that they didn't want to hear about Ray.
Thank you so much.


Rebecaa's Mom:

It really sounds like your daughter is a special person. I do understand about being commited 24/7 but at the same time you need "your" time. It is quite a handful, I know. But if I had the chance to do it all over again, I'd do it in a heartbeat. I am so used to taking care of Ray and now I don't even know what to do with myself. It is a very strange feeling.
Take care.


KP2002:

I'm glad you made that choice about the pillow. It's hard because you have to learn of the risks but at the same time you can't live in fear everyday either. But I am glad to hear that your not letting him sleep with the pillow all night. I know alot of people don't realize how much of a danger a simple pillow can be. We never knew. Ray had four pillows on his bed. Who would have ever thought? I do believe that Ray had met his fate, as well. And he knew it too. The day before he died he told me that he was going to die from a seizure. Of course I didn't believe him. But it was like he knew.
Take care.


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Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.

[This message has been edited by MissingRay (edited 10-16-2002).]

Welcome to the boards Bridgette! http://www.healthboards.com/ubb/wave.gif

I am so glad that you found us over hear! I am so sorry to hear your story about Ray, but he was so very lucky to have you in his life. Could you even begin to imagine what he might have done if it weren't for you & your love for him. There are times that I would be so lost if it weren't for my husband. & Then there are my friends here at the boards of-course....when my hubby has had a rough day & is not in the mood to listen to me I turn to the boards & let me tell you, the people can really be a life saver! They are wonderful.
I hope you stay with us, and am looking forward to getting to know you!

Wishing you well!
http://www.healthboards.com/ubb/heart.gif Kim

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Yesterday is the past, tomorrow is the future, today is a GIFT, that it is why it is called the present.

Kim,

Thank you so much. I'm glad I found this board too. The other board I belonged to were making me feel worse because some people got mad that I post there because they don't like hearing about Ray. Ignorant...yes but it isn't going to stop me. But I thought that maybe I should find new people to talk to and I am so glad that people don't get mad at me here for posting.

Hope to talk to you again,
Bridgette

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Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.

[This message has been edited by MissingRay (edited 10-17-2002).]

Hi, http://www.healthboards.com/ubb/smile.gif I guessed with the name you found the board. I think its wonderful that you are telling Rays story to all the site http://www.healthboards.com/ubb/smile.gif I hope you are able to help many ppl.

Hey bluebird!!!!

Thanks for the support. I don't think I have been treated fairly elsewhere...you know what I mean. But your support means alot. I need all that I can get.

Bridgette

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Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.

http://www.healthboards.com/ubb/smile.gif if you need any help yell...... I think ppl don't like to know that is a possiblity with this. I know I am one that tries hard to forget...... But it is important. It has also made it where I am alot my conscience of things around the house that could hurt me during a seizure. And I have found myself wanting to know sooooo much more about E. There is sooo much more to learn, and everytime I think I understand it something new is found..... Bridgette I never knew u felt guilty for not going....... Just now that he is always with you and your daughter. The pillow is the first thing I have my husband trained to pull out from under me.(Only after reading one of your posts) I only have the Grandmals also and I seem to always smash my face in..... I truly never thought that would hurt me.... I figured I'd pass out and well never thought much after that. So I have to Thank you ..... you may have saved me on any number of occasions already.

Thanks bleubird.

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Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.

1st of all thank u so much for your message you are sending out across the net MissingRay! It is very nobel of you to do this. I hope that one day you will be able to forgive yourself since I beleive as well that there is nothing you would have been able to do to stop it. I was his time.

Its so hard to beleive that some ignorant people would make u feel bad for your loss and the message you have for people. That is unforgivable! You will not find that here. Although I havent been here for a while I know that this place has lots of compassion to offer and will listen to what you have to say.

I think that sometimes doctors just dont care or want to listen to us. One of the problems is that there is really not much known about the way the brain works or what causes things to go wrong. When I first got the concussion that causes my seizures for about 2 months after that the doctors kept asking me how much I had had to drink! and I dont drink!!! Then finally I went to my family doctor instead of the ER and he referred me to a nuero. And then it took 3 nueros before I found one that didnt say either they didnt know what was wrong with me or that it was all in my head.

Even now the nuero I see sometimes it seems like he is just not listening and I have to constantly repeat myself. but I am finally getting it under control after about 2.5 years.

Again, thanks for your posting here and hope you keep coming back.

Brad.

Thanks Brad. I'm going to post another thing in here. I belong to a grief website and I put my story in there and I would also like all of you to read it.
I'll put it under the title: "The Story Of Ray."

Thanks for all of the warm welcomes.

Bridgette

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Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.

bumping.

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Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.

Missing Ray - what type of medication was he on when he died. How often were his seizures? Did the doctors not try to change his meds? Were they considered seizure clusters - in other words he regained consciousness in between each? Did he eat anything unusual he day or night before he passed. My prayers are with you and thanks for helping all of us who are trying so hard to understand this illness.

Lazoo,
Ray was taking Tegretrol, Neurontin and a valium called Diazapam. He had tried a number of different other medication as well, but nothing controlled Ray's seizures. Ray would have seizures about five days out of the week with two to three seizures per day. His seizures were a pattern. They would always occur within an hour upon waking up. First he would go into a myoclonic seizure for about an hour or two and then he would go right into a grand mal seizure for about two minutes. Then about two hours later the seizure pattern would follow again. No, Ray didn't eat anything unusual the day or night before he died. It's just the fact that we were never told about any kind of risks in having epilepsy and Ray was alone when he had his seizure and suffocated in his pillow. The doctor never told us that you could die from having a seizure and he never warned us of ever suffocating in a pillow while having a seizure in bed. We were never warned of anything. And it has to be done so that other innocent people with epilepsy don't get their lives cut short like Ray did.

Thanks for your thoughts. And Happy National Epilepsy Awareness Month (even though it didn't get passed yet.)

Bridgette

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Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.

bump

http://www.healthboards.com/ubb/wink.gif

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Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.

Hi Bridgette, Glad to see you are still telling Ray's story. SO important that people hear what you both have been through. You are really special to keep reaching out in your grief. Any luck with getting the story published??

Hey you!!!!!!! Glad to see that you joined!

Unfortunately....no I haven't had any luck. Who is going to want to publish a depressing story like this? That's the way I look at it. I wish they would just to let people know that it can happen but I think they are looking for more positive stories than negative. So....all I can do is reach out to people myself and let them know that this can happen and to be careful. Who would have ever of thought of the dangers that one simple pillow can do while having a seizure.................if I can help so that doesn't happen to anybody else I will do whatever it takes.

Well....it's good to see you here. Talk to you later and thanks for posting in my thread.

Bridgette

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Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.

Sorry to hear the publication has not worked out. You are doing well getting the word out though!
It is good meeting friends in new places! Take care or yourself and that sweet girl!!

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Son, 11 with Epilepsy